Experts give top concerns on genetic tests

In the final session today before the Presidential Commission for the Study of Bioethical Issues, Chair Dr. Amy Gutmann asked all the experts who presented information to talk about their greatest concern with genetic tests.

Gutmann, the President of the University of Pennsylvania, told them: “The Commission is very likely to focus its report on issues of privacy broadly construed. Anything that is relevant to privacy would be of great interest to the Commission.”

Among the responses:

Jane Kaye, Director of the Centre for Law, Health and Emerging Technologies at Oxford University: “I would say I see the whole genome sequencing is another twist on things happening already on science. … What we need to do is make (privacy concerns) more nuanced and allow individuals to say how whole genomes are used.”

George Annas, Chair of Health Law, Bioethics & Human Rights at Boston University School of Public Health: “This is fundamentally a reductionist (perspective), but the more we look at genes, the less we will look at the whole person and take the whole person into account.”

Pilar Ossorio, Associate Professor of Law and Bioethics at the University of Wisconsin-Madison: “We have used anonymity as a way to protect research participants from harm , and we are not taking seriously the fact we really are having decreasing amounts of anonymity and decreasing ability to provide that to people.”

Melissa Mourges, Assistant District Attorney and Chief of the Forensic Sciences/Cold Cases Unit in the New York County District Attorney’s office: “Knowledge is power and I would hate to give up the knowledge you can gain from this project. I think we figured out how to do it with the forensics database and we are ruthlessly, smart people and we need to figure out a way to get it done.”

Daniel Masys, Affiliate Professor of Biomedical and Health Informatics at the University of Washington School of Medicine: “The genome will tell the book of humanity, and as it is, we only understand one third of the words. … My major concern is that privacy not materially inhibit the ability to decode that book and understand what that means.”

Retta Beery, mother of twins who benefited from improved diagnosis through whole genome sequencing: “I agree that information is a good thing, and it is a good thing that can be used in diagnosing rare diseases, and it is something that should be shared in a broader format.”

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This is a space for the members and staff of the Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.